Welcome back to Billy's Page #32 {there have been   visits to this page}

     Thur. 29 Jan. 2004  ( 727-898-7451 Room # 269 B)

    Hello, welcome back to Billy's Page. It is 11:00pm, I just returned from the Hospital to Update Billy's Page for all of you, His Friends, as to how Billy and the rest of us are doing. Alicia and Ama are still at the Hospital waiting for Billy to settle in back in his room. By the look of the number of visits to the previous page, there are alot of you wondering how the day went, so Here I am, and here goes.

    Billy had a restful day today, the surgery was put off until 6:00 this evening. Dr. Petrovic was concerned about the amount of antibiotics that Billy's body had retained. Since Billy was supposed to undergo surgery yesterday, and was unable to eat or drink, it just compounded the situation as he was unable to eat or drink today as well due to the re-scheduled surgery. His Body was unable to excrete the toxins, and this concerned Dr. Petrovic, A kidney specialist was contacted. Upon close evaluation, all agreed that to proceed with the surgery would not endanger Billy, and or his kidneys.

    We went with Billy to the preparation room, where we met with Dr. Letson, Billy's surgeon. Billy had asked Alicia and I earlier if he could speak to Dr. Letson alone, so when Dr. Letson arrived for surgery Billy was able to speak to him, Alone. After a few minutes we were summoned back to the room where Dr. Letson explained to us what he will do, and hope to achieve in this delicate operation. Alicia and I gave our consent, and Billy was prepared for surgery at 6:00pm. Our good Friend Debi, who works at ACH in the Cath Lab, accompanied Billy to the OR, and stayed with him until he was under anesthesia. Thank you Debi *wink*. At 7:30 pm, we were told that the prosthesis had been removed, and that the leg is being prepared for the temporary implant. At 8:45pm Dr. Letson came to the waiting room to meet with us. Billy's surgery was completed without any complications, and only minimal blood loss. Dr. Letson informed us that Billy's muscles had done a fabulous job in reconnecting to the prosthesis that was removed, and was sorry it had to be removed because of infection. Dr. Letson was able though, to save all of Billy's muscles in this operation, and the temporary prosthesis should perform perfectly. I will update you all more completely about the surgery in the next few updates, I just wanted to get this page out to you so you all can get to sleep..........and so could I *wink*. We met Billy in the recovery room at 10:00 pm, and although he was still heavily sedated, he managed a smile, and a "thumbs up". Dr. Petrovic met us there, and told us she was happy about the outcome, and assured us we did the "right thing". Billy was moved to his room, back in 2 SW, and is resting comfortably.

    Alicia and I, on behalf of Our Son, would like to Thank each and everyone of you, from the bottom of Our Hearts, for the support, Thoughts, Prayers, and Love you have given Billy, and us. Although the true battle has just begun, we are relieved that we are over this hurdle, and we couldn't have done it without you. Thank you all so very Much, We Love you. Please continue to Pray for Billy...........good 'nite.
     Fri. 30 Jan. 2004 
    Hello, and welcome back to Billy's page. I spent the day with Billy, and I'm here to tell you he is doing just fine*wink*. Billy slowly came out of his drug induced rest throughout the course of the day. Dr. Letson came in to see him this morning, and reassured us that Billy should have no serious complications from the removal of the knee and femur (prosthesis). He told Billy that he would have no difficulties rebuilding Billy's leg after he recovers from his bone marrow transplant, Billy's leg will be "better than new". Billy has access to a pain medication via a pump that activates by pushing a button, Billy pushed the button only ONCE all day ! I have included a couple photo's of Billy in the recovery room, and one when he was brought back to his room in 2SW. If you'd rather not view the photo's because you don't want to see Billy in an unpleasant situation, I can understand. But for those of you who would like to see Billy, you can click this camera and see Our 'lil Angel. I don't want to seem morbid, but you all deserve to see Billy, I haven't hid him from you at all throughout this web site, and I won't start now*wink*.
    Billy was able to have some jell today, and managed to drink some water. His kidney function will be closely monitored, and he will most likely need another transfusion of red blood as soon as tomorrow. Dr. Letson is expecting Billy to be up, and out of bed on Monday.............yes, this Monday ! The temporary prosthesis that is now in Billy's leg won't be as stable as the one that was removed, it is not meant to be. It is just in place until Billy is well enough to receive a new "permanent" prosthesis. Yes, Billy will have to undergo another operation just like this one in a few more months, that will be the 3rd. Please Pray for Billy...............

    Thank you Mary M. and Family from Saulte Ste. Marie, Mich. for the card Billy received today !!Give Matthew a big {{{{Hug}}}} for us !!
     Sat. 31 Jan. 2004 
    Hello, and welcome back to Billy's Page. Billy is slowly but surly coming back to us *wink*. Ama spent the 'nite with Billy at the Hospital last 'nite, so that Alicia can get somewhat of a good 'nite sleep at home. Alicia has stayed by Billy's side every single 'nite while he is in the Hospital, unless we are lucky enough to have Ama here to spend at least one 'nite at the Hospital. Thank you Ama ! Multiply that by 17 months.............that's a lot of 'nites sleeping on a recliner in a Hospital room. Alicia hoped to have a quite 'nite at Home, but things aren't the same at home with her baby in the Hospital. I woke to the sound of sobbing, Alicia was in the living room sobbing as to not disturb my sleep. If there is any sobbing to be done, and alot has, we'll do it together from now on. We can't do this alone, neither one of us. We have to share our sorrow as well as our joy. I tell you all this because this is REAL, this is Life, and this we'll overcome. Alicia has Multiple Sclerosis, as most of you know, and she will take what life hands out right on the chin, get back on her feet and take it again if she has to. I tell you all this because I see what this devastating thing that has taken hold of our Son is doing to His Mother, My Wife. I ask you all to Please Pray for Alicia as you do Billy. To give her the strength she needs to overcome her illness, as she devotes her every once of energy to Billy. I am sorry to burden all of you who read Billy's Journey, with having to read this, but behind the scenes the true struggle hides it's face. I have tried to keep this part of Billy's Page as private as I possibly can, but it is beginning to become more and more out front the past few weeks that I can no longer suppress it, and from now on I won't. Please understand (and I know you do) that what we are facing is a very serious situation. Emotions are everywhere, and anywhere, please forgive me if you find the following entries to Billy's Page more graphic, more personal, and more of what Billy's Page is truly all about. I have left out so very much that truly needed to be said in order to save some of you the anguish, and heart ache which most of us, in Billy's immediate reach must endure. My source of outlet has been "Billy's Page", but not in total. I can't use Alicia as my Outlet, for I am her's. There can be no more 'nites alone with our emotions as they will truly be the death of us. Prayer has been the fighting force behind Billy's survival, and will need to be to see this through, and to see US THROUGH IT. Alicia is so very tired, please give her the strength she so desperately needs, Please Pray for Alicia as I know you will. I Love you Alicia, and I Love Our Son..............we Love all of you............good 'nite.
     Sun. 1 Feb. 2004
    Hello, and welcome back to Billy's Page................................The door slams, from behind the curtain comes the words "I'm sorry", it is 2:00 am. Both Alicia and Billy are startled once again, as they try to get an hour sleep without interruption, and once again Billy loses control of his bowels, and has an "accident". For the 3rd time tonight Billy needs to be cleaned up..............SLAM.......................it is 3:30 am, and the door has a mind of it's own, again the nurse is "sorry", again Billy is upset, again a nite without sleep, and I haven't even got there yet. This was last nite in room 269 at ACH.

    Although Billy didn't get very much sleep, he managed to get a few winks during the day today. He is in good spirits, and managed a few smiles as well. The drain that was placed in Billy's leg after the surgery was removed this morning without complication or pain *wink*. Billy actually had a chance to "relieve" himself in a bed pan this morning too, instead of having the "stuff" scared out of him as was the case earlier. Billy is coming back to us, as the effects of the surgery is worn off *wink*. Alicia and Ama are doing some shopping, as I enjoy another day with Billy. The level of vancomycin in Billy's kidneys are slowly coming down as expected, and this is a good thing. Billy's platelet and red blood counts are also on the decline, and he will more than likely need another transfusion in the next couple days. The x-ray of Billy's leg looks great, and the temporary prosthesis is in the correct position. Billy will be helped to his feet sometime tomorrow, as was the case after his 1st surgery last year. It is just amazing that after just 3 days, he is able to get out of bed. If you would CLICK HERE you will see a photo of Billy's 1st surgery taken 2 weeks after the fact, at Dr. Letson's office. I will try and get another photo posted of this surgery as soon as we get the bandages off, probably tomorrow as well. Dr. Letson used the same incision as in the first surgery to open Billy's leg this time as well.

    Ama will be heading back to NJ tomorrow afternoon, we couldn't have gotten through this past week without her, Thank you Ama, We Love You !.................good 'nite

    This just in.......................CLICK HERE ! to see a Great photo I took of Billy and Alicia tonight !....... Good 'nite again !!
     Mon. 2 Feb. 2004
    Hello, and welcome back to Billy's Page. Sleep? are you kidding. And just when we are able to fall asleep, the light comes on,............the nurse comes in,..............30 seconds later she's gone, it's 3:15 am. The anticipation of what lies ahead, keeps Billy in an uncomfortable mood, and unable to sleep. Alicia said last nite went fairly quickly *wink*. Billy was anxious about what was in store for him this afternoon, and remained restless all day. Alicia and Ama ran a few last errand's, and Alicia took Ama to the Airport for her flight Home to NJ. All went well, and Ama should be getting to NJ as we speak *wink*

    We were visited by the Nurse practitioner who removed Billy's dressing that was over the incision. The incision really looked fabulous, there was no bleeding, and the healing was already underway. We left the bandage off, and just added some dressing strips to cover the wound. I have added a new photo of the incision to Billy's Page, you can click on the camera below to view it. I must warn you though, it isn't for the faint of heart. Click on the other camera, and you'll see a photo of Billy sitting in his chair ! Yep, Billy got up out of bed, walked to the chair, with the help of a walker, and sat down for a while. Just 2 1/2 days after his prosthesis was removed, he is out of bed !! We are so Proud of Him, as I know you are too !!

    We were also visited by the Dr. who will be doing the surgery to install a Broviac catheter in Billy's chest:
    :: Definition of Broviac catheter ::

    Hickman® catheter: a hollow silicone (soft, rubber-like material) tube inserted and secured into a large vein in the chest for long-term use to administer drugs or nutrients. The catheter is inserted through a small incision made near the collarbone. A "tunnel" is made under the skin to another site where the catheter exits. The catheter is then pulled through the tunnel and into the vein leading to the heart. Medication, blood products, nutritional support, and new bone marrow can be delivered through the part of the catheter extending outside the body, and blood can be drawn from the body through the catheter. This device must be scrupulously cared for to prevent infection. The HICKMAN® catheter may be left in the body for months. Removing it is a relatively simple procedure. See also INDWELLING CATHETER and BROVIAC® CATHETER. HICKMAN® and BROVIAC® are registered trademarks of C.R. Bard, Inc. and its related company, BCR, Inc.
    This procedure will be done when Billy is admitted to the Hospital on the 16th of this month, for the beginning of the bone marrow transplant process. This afternoon, we were visited by Dr. Cotman. He will be in charge of Billy's total body radiation process. Billy will be undergoing 6 sessions of total body radiation when he is admitted. Billy will undergo two 35 minute sessions per day (6 hours apart), for 3 days. This radiation will "cripple" Billy's bone marrow so that the transplant can replace Billy's own bone marrow, and rebuild his immune system.

     Photo of Billy's Incision 2-2-2004 (viewer discretion caution)
     Billy sitting comfortably in his chair !

    Billy will be helped to his feet again tomorrow, and hopefully be able to take a walk !! Billy's leg will remain unstable for the duration of the BMT process. The temporary prosthesis is not meant to sustain Billy's weight, it is meant to occupy Billy's leg until his new prosthesis can be implanted after his BMT has been successful, probably 4-6 months from now. Instead of Billy's leg being longer, this time it was purposely made an inch shorter so Billy will have no trouble in his gate.

    Billy gave Alicia and I permission to spend the 'nite together at Home *wink*. He feel's comfortable enough, now that he was able to get up with absolutely no pain. He thinks he can actually get some sleep tonight ! He was so worried that it was going to be "rough going" today, and relieved it wasn't *wink*.........................
     Tue. 3 Feb. 2004
    Hello, and welcome back to Billy's Page. "I slept till noon", is what Alicia told me as we talked on the phone. As I said in yesterdays update, Billy felt comfortable enough to "allow" Alicia to spend the 'nite at Home,*wink*. Alicia came home last 'nite, and it wasn't 5 minutes before she was sound asleep after she lay down. I am, as is Billy, so glad she had a restful 'nite. Alicia gets her Avonex injections on Tuesday's, so she had to hit the Dr's office this afternoon. It is now 7:30 pm, and Alicia is at the Hospital with Billy. There is an addition to Billy's room this evening, and for the life of me I can't figure out what protocal was used to set up such an arrangement. A 5 month old baby girl is now in Billy's room with him. As I was walking out this evening to come home, the baby was crying and Billy had that "I'm not gonna get a minute sleep" look on his face. Lets hope he is wrong *wink*. Alicia usually gets an adverse reaction from her Avonex shots, so lets hope she sends herself home tonight if it is a "bad" one.

    Billy woke up this morning around 10am, and I ordered him some breakfast. His stomach was a bit un-easy, and he brought some of it back up. He felt much better soon after, and he managed to get out of bed, walk around a bit, and sit in his chair for an hour or so. It is important for him to sit up as much as possible to keep his lungs clear, and strong. Billy is drinking more liquids on his own so Dr. Petrovic said he may be taken off IV fluids tomorrow. Billy promised he'd continue to drink enough fluids to keep his electrolites up to a good level. The level of vancomycin in Billy's system has returned to normal levels, as well as his potasium level. Dr. Petrovic is hopeful that Billy's kidney function is back to near normal before we proceed with the BMT. We are still looking at the 16 th of this month for admission.

    Billy's physical therapist came in to see him this afternoon, and they took a walk down the hall. Billy managed to walk a total of 50 feet......to the surprise of all who witnessed it !! Billy's release depends on his ability to get around, and take in fluids, so keep your fingers crossed *wink*. Billy's Buddies, Debi and Michelle from the Cath Lab, came up to spend some time with Billy this afternoon. They are two of the nicest people, and Love Billy so much. Thanks guy's, Alicia and I truly appreciate your Friendship, and Deb...................this *wink's* for you !!

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